Can someone shine some light on my symptoms whilst I await seeing a neurologist

New diagnosis and before diagnosis
1

So, I’m finally been referred to a neurologist through the NHS, but with the virus at the moment, it’s been post poned, but some of my symptoms that I’ve been suffering with on and off with for years have now worsened, I believe I’m having a very severe flare up.

here are my symptoms, and I’m hoping someone can shed some light ( I am lucky that one of my close friends is a nurse and she’s said she’s sure it’s MS, but I’d love to hear the input of what some of you guys think.)

Pain in rib cage - like someone pushing inwards by the ribs as well as sudden sharp pains in ribs and sides.

shaking and tremoring in arms, hands, fingers and legs

Pin and needles and severe numbness in both sides, but worse in right side.
aching muscles everywhere, sudden hot stabbing pains in legs, arms, shoulders. Really acute and sudden.

severe tingling and phantom itching, enough to keep me awake, like insects are under my skin .

weird tingling in right cheek and upper lip.

Jaw pain and sudden ear pain, like someone’s pushed something sharp in my ear.

loss of feeling on fingers tips, struggle to type on a touch screen

constantly tired, struggle to sleep off the feeling of tired

sudden headaches that come out of no where and then suddenly go ( don’t get these as often as the other symptoms )

ive had these symptoms in flare ups for a few years now, but just thought it was the way I was and didn’t want to bother a doctor but lately they’re a lot more severe and often and tbf they’re affecting my quality of life now.

2

Hello Gee

I’m sorry you’ve had these horrible symptoms, and these days of Lockdown make it all the harder to deal with.

However, the big problem with MS is that it has a multitude of potential symptoms, many of which are shared with other diagnoses. Having a friend who’s a nurse convinced it’s MS does not mean that’s what it is. Having a friend who’s a neurologist who’s done a complete neurological examination, then believes you have it, still wouldn’t mean you have MS.

What counts for an MS diagnosis is symptoms, plus neurological exam, plus test results. So without having had any tests (MRI at least, maybe plus lumbar puncture, maybe plus visual evoked potentials or nerve conduction) you can’t expect the eventual diagnosis to be MS.

Sometimes it seems like it would be a relief to have the tests and then to have a positive MS diagnosis. Then you’d be able to get your head round what’s been afflicting you and deal with it. I understand this, as do many of us, both diagnosed and those going through a difficult ‘limbo’ period.

All I can suggest is that you talk to your GP. If they’re anything like mine, right now they are accessible, it’s just a case of making the reception staff aware of your need to speak to someone. Of course, your initial neurological appointment is postponed so you will not be able to get a diagnosis, or even anything ruled out, in the short term. But at least if you were able to speak to your GP, you might get a listening ear. At best, you could ask for a prescription, maybe for something like Amitriptyline. This is a drug used for neurological pain (and tingling, itching, pins & needles and numbness can all be considered as part of neurological pain). It has a secondary benefit in that you take it in the evening, so it helps with sleep too.

I do wish you all the best. I might wish I didn’t have MS, but I’m not convinced I’d swap it for symptoms and fears that it is MS during a time when diagnosis is virtually impossible.

Sue

3

I’ve been having weird symptoms for about 3 years now, feeling like an electric current is running through my entire body, mild muscle spasms in my arms legs head and face , it keeps me awake at night, slight loss of feeling in the left leg, and pins and needles in my legs constantly but it is very mild, I had a MRI which showed two brain lesions, I’m over 50 though so that is normal the neurologist is pretty confident it’s not Ms , although there is recent family history of it , I also get pains in my eyes like stabbing pains and stabbing pains in various parts of the body only very briefly, I was supposed to be getting a lumbar puncture but that has been called off now, the worst thing is people stare at me when I go out as I look so confused,trying to negotiate my way around is difficult as I cant think clearly

4

you’re not having a severe flare up - you’re experiencing a lot of problems which may turn out to be due to m.s.

Being in this no man’s land is a horrendously difficult time - try not to let these symptoms and the resulting anxiety become too dominant in your day to day life.

You need to get an appointment with a Neuro then an MRI scan and possibly other tests - these will confirm one way or another if it’s m.s.

5

Hi Gee, your symptoms sounds very similar to mine.
How are you doing now?